The Fireworks Inside My Head

Do you ever feel like you have a humdrum of fireworks-sounding noise echoing in your head? What about throwing in an extra scoop of sharply flavoured, vexing headaches just to prove that there really is a brain hiding in your upper echelons?

Knowing there is a brain in there at least demonstrates that cognition - memory, attention span or concentration - should be present too. How high that level of brain function is, remains to be seen, however. Warm summer temperatures fried my whole being the past few months and cognitively I feel mentally depleted. Autumn is on its way, and I am using what little energy I have left to share my wisdom for navigating what your multiple sclerosis may have served you.

My memory has raised eyebrows for at least a decade, if not longer. A touch of aphasia meant that “politics“ became “pilitoc“ and “the birds are flying low“ became “the birds are lying flow.“ Such language hiccups are not just linked to my English either, (as it first happened in my native dialect Flemish and in Dutch also).

Cognitively, when fatigued beyond measure, my English and Dutch sound like Chinese, and when this happens, blank, gazing eyes take over. My thinking and speech also slow down, but since people sometimes say I speak too fast, it becomes a positive rather than a negative side effect of life with MS. Rock bottom? Completely forgetting I was my brother’s witness at his wedding.

I write things to remember on Post-It notes, calendars and in diaries, but then I forget that I wrote something down or worse, that I even own a journal and calendar. Otherwise, I’d still say, “Venice? I was in Venice?!” Hilarious to some, annoying to those who rely on me, and embarrassing to myself.

Of course, people without MS can also have memory and concentration issues. The difference between them lies in myelin and nerve fibre damage in those with MS, where the transportation or retrieving of memories to and from the brain’s storage area breaks down. The number of lesions and lesion area on the CNS correlate to the cognitive issues and cognitive problems could worsen during a relapse.

There are other cognitive issues related to MS, like visual perception, word-finding, prioritising and planning or even difficulties making decisions. On the other hand, one’s IQ or long-term memory are likely to remain intact. If you are worried about your mind, a neuropsychologist can pinpoint what area of cognition is affected, and show you how to improve it. Here are a few of my favourite tips for keeping your mind sharp in the meantime:

• For those struggling with cognitive impairment, many apps these days focus on memory and cognition tests, a few worth mentioning are NeuroNation, Luminosity and Peak.

• On those days where even the simplest task seems like a nightmare, try to prioritize tasks and stick to a routine to help you remember things. Doing so will help to reduce those feelings of stress and confusion.

• I have found using subtitles while watching television to be helpful. Some people even remember more when they see spoken words written out!

• I recommend using handwriting where possible instead of laptops or smartphones, as the physical function of writing is aided by the mental function of saying the words inside your mind. (Plus, handwriting also helps dexterity!)

• If you prefer, consider going digital! Going digital allows you to collect everything you need to remember in a place on your laptop, phone, or tablet while also setting sound alarms and reminders. Most smartphones also have a voice recorder, which is handy in many situations!

• For those situations where you really can’t stand to forget something, consider repeating things aloud when speaking on the phone or in places where you need to keep focused.

• When writing, I always joke that I “often strip”, meaning that I find an area where there are no distractions where I am sitting other than that of my pen gliding over paper, or laptop keys feeling the need for speed. At the end of the day, remembering things and even talking is often easier in quiet surroundings.

MS can affect everyone differently, across a range of physical and emotional symptoms, and everyone copes with the day to day uncertainty and challenges in a different way. But wouldn’t it be great if you had advice on how to handle those emotions?

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